"Constant Vigilance"

Today I flew to Chicago to attend the Autism One conference, a generous Mother’s Day gift from my husband.  I didn’t even know that the conference was taking place- he registered me, found the flight, and coordinated the trip with my family in WI.  Such a lucky mama.

As I looked around the plane, I saw people from all walks of life.  Older couples traveling for a long weekend, corporate professionals making a day trip in their suits and heels, children traveling with their parents for a fun-filled short vacation.  And as I sat, looking around at the diversity of the group of 200 passengers, I wondered if I was the only one affected by Autism.

1 in 54 now have Autism…so realistically, there should have been four of us on that plane.

Why does it sometimes feel like I am the only one? 

I watched one family in particular, a family with two smiling children.  My flight left at 6:40 AM, which meant an early morning for these kiddos.  However, there they were, carefree, happy as can be, and walking independently, as their parents walked behind, sipping their Starbucks and laughing with one another.

I don’t know this “non-autismness,”a made-up word for families who are “normal.”  One author, Kim Stagliano, author of the book All I Can Handle about raising three, yes three daughters with Autism, wrote about the “constant vigilance” that she endures.  It is such an accurate term.  I never feel like I can carry on or complete a conversation, because I am usually apologizing for ducking out to chase Hunter, or have a wandering eye that constantly surveys the surroundings to make sure he is in plain sight.  I don’t know what it is like to walk into a crowded arena and not worry every second that my son will bolt and not know how to find me.  In the last three years, I can honestly say that I have multi-tasked with Autism everyday, whether it be on the phone with a loved one or attempting to make a meal, where my mind or vision hasn’t turned to Autism. 

During the flight, I caught myself scanning through the reminders for today in my mind- 11:00 OT, 2:00 neurologist appointment…and then I realized that I am not physically present today with my son.  My mind was there, however, unable to turn off the constant vigilance. 

I arrived at the conference and as I walked around, listening to strangers chat, a mention of "my child does that, too!," hearing words like "mitochondrial dysfunction" and "gluten/casein free recipes," seeing faces that I have "met" through online chat groups...I realized that I am not alone.  I am not the only one fighting for their child affected by Autism.  The first speaker started his lecture by asking those of us who had a family member with Autism to stand up.  98% of the room was standing, leaving me speechless and with a tear in my eye.  Then the speaker, a congressional representative who lobbies for parents just like me said, "For every one of you, there are 10,000 more who could not be here today." 

And it was a packed, standing room only conference hall.

 

Constant vigilance is exhausting.  It is so frustrating to me that I have to ask the same question repeatedly because I either had to walk away from a conversation or I simply can’t remember the answer due to the fogginess created by the vigilance.

 

However, being vigilant is not always negative.  For if I had ignored the little thoughts of autoimmune reactions, gut changes, skin discolorations, normal speech development , all of the thoughts that would not leave my mind when I was fighting the intuition battle vs. the Autism that was developing, we would not be where we are today...attempting to overcome a diagnosis that some would describe as “uncurable.”

 

Robert Kennedy Jr was the final keynote speaker today.  He told a story of his family of three children, all who have severe allergies, including anaphylaxis reactions.  He said his wife could put her hands on her children, feel their heart rate, and know exactly what they had reacted to.  He said at that point, he knew in relation to Autism that these mothers knew what happened to their kids.  Whether it be vaccines, autoimmune reactions, or a child born with early symptoms of Autism, the mother always knew.

Vigilance.  Accepting the challenge and constantly seeking recovery.  And fighting not only for my son, but for all of those affected by this national epidemic.